Health Update – not ME after all?!

Those of you who follow me on Snapchat might already know that things have taken a turn for the worst last month. Since some of you have asked how things are going, I decided to make a Health Update post. If you want to know what’s been going on, keep reading below!

After my tonsillectomy things actually got better for a while. Whilst I was having extreme pain in my throat, my chronic body pain was gone for around 2 weeks. I was happy, I thought maybe the surgery had helped. Until mid March, when the pain came back worse than ever. I had what I genuinely think was my worst flare ever.

It had stated a few days earlier and then on that particular day it just went through the roof. I thought, as always, it would just end up going back down, I took pain killers and went to work. Eventually I had to go to the hospital, because the pain was too intense. My friend Sasa went with me and I have to say she was a life savior! She has a type of arthritis that also gives a lot of pain, so she actually knew how to explain it better than me and she stayed with me the whole time. The pain only went away after they gave me the strongest medicine they had, which ended up making me high.

Along side with the pain, my mobility has also decreased exponentially. I can walk and if you only see me passing on the street, you’d never know that after walking for 200m I am in intense pain. Just going from the bus station to my work is excruciating. It feels like my left calf is on fire and “stuck”. I tried explaining this to my GP, who just said it’s because of the ME. The thing is, I wasn’t feeling comfortable anymore with having her as my doctor, because anything I have, she says it’s from the ME. So I decided to check in with a rheumatologist, who made me some tests.

The good thing is that I don’t have anything rheumatic or arthritis. He thinks, from everything I’ve told him, that I have Fibro. Since Fibro and ME have 99% of symptoms in common, it’s understandable for someone to get misdiagnosed. I don’t have the neurologic symptoms that ME patients usually have – smells and certain sounds can make me sick or hurt my ears, but that’s more or less it. I also don’t feel the exhaustion typical to ME patients – I get exhausted when I cannot sleep due to the pain and then get more pain due to not sleeping.. It’s a vicious circle, really.

So right now we have no idea what this is. I can’t walk, have reactions to almost every food I eat and my IBS is out of control. But my GP just klings to the ME and says everything is because of it. Which might be, it’s a possibility. However, I want to get tests done and she says no, because it’s “from the ME”. So I made the difficult decision to see another GP. This is someone who has been recommended to me by a good friend and someone who is known to be very careful and actually ask for tests. I hope she will make me do a intolerance test, so I can see what is going on. Also, I’m sort of fed up of losing and gaining weight without doing anything (5kg loss in one week is definitely not ok or healthy).

Basically, that’s where things are at right now. My pain is extremely high, but my hopes of finding out what this is, are even higher. I think I finally came to terms with the fact that whatever this is, it’s a chronic and very misunderstood illness. But I am not going down without a fight! If I end up in a wheel-chair or unable to walk, I’m sure as hell going to do everything I can to avoid it! If this is ME or Fibromyalgia, I don’t know. Maybe it’s both, maybe it’s something totally different. Honestly, right now I only want to know what it is, so I know what to do to have a comfortable life.

And I have to say that I am extremely lucky to have people around me who support me more than I ever thought they would. Friends I’ve only known for months, not to mention Markus – who deals with this better than me at times and is always there for me, saying we’ll get a pink wheel-chair if necessary (if I gotta have one, at least we’ll make it cute!). And you guys. My lovely readers (I don’t like the word followers), who are always here for me. Some of you have been following the blog for years and still keep in touch through email and social media.

1 Comment

Holy cow, this is such an unfair battle for you! I really hope your new GP will actually sit down and find all the answers you need to battle everything. The fact that you are so hopeful is wonderful and very inspirational! Definitely cheering for you!